M.E. I feel like I'm dying

Discussion in 'Fibromyalgia Main Forum' started by LadyCarol, Mar 7, 2008.

  1. LadyCarol

    LadyCarol Member

    I thought I was improving once upon a time, but over and over again I get kicked right back to square one. This illness is sucking the life out of me. Each week I become weaker, and when I have a better day and improve a little it's always followed by another day/week when I'm knocked back again and yet another week goes by and the lethargy continues to rob me of energy, my mind feels like it's closing down, no longer wanting to carry on trying to fight something that cannot be beaten. Help ?
  2. Missizzy

    Missizzy New Member

    LadyCarol--I'm so very sorry you are feeling hopeless right now. I have severe ME and I think I do understand. Can you let those closest to you know of your feelings? You need some gentle hugs right now and some help with rediscovering the motivation to fight this DD. Can you speak to your doctor about a referral for some counseling on living with chronic illness?

    I've found that it's helpful to keep an ME journal. I write in it everyday rating all the facets of my illness. I'm especially dedicated to writing about my good days. It really helps me to read those passages on rough days. It does seem so unfair that we occasionally get a taste of "real life" and then we get kicked back down. But remember, we get those wonderful tastes when we least expect them. That's what makes them so sweet. Please just reach out and let someone close know how you are feeling.

    I know that everyone on this board cares deeply. Please take care of yourself.

    A very gentle hug,

  3. tansy

    tansy New Member

    that ME patients feel better for a day or so before becoming worse; this is regardless of levels of activities and is not the result of overdoing it. many of us also feel much better a day or two before succumbing to a virus that's doing the rounds. bacterial infections do not have the same effect.

    i've been through prolonged periods of going downhill and each time the tx, through doctors or those i use to self treat, have been different.

    the feeling the mind is closing down, and the cognitive impairments becoming worse, is one of the cruellest aspects of ME. sometimes these bad periods can start to resolve for no apparent reason.

    the last of my downhill periods seemed more relentless than the ones before, and just seem to happen. i had already been ill for decades. turning that around took a lot of research, one doctor who understood ME and the chronic infections that can be implicated, and then taking matters into my own hands.

    not cured but better than i have been since that downturn; my previous very long list symptoms is now about half now. part of improving with ME is accepting our mitochondria have been adversely affected so we need to find our own means of pacing which will likely vary from day to day.

    tc, tansy

  4. jasminetee

    jasminetee Member

    I feel the exact same way. I can't believe the amount of suffering that ME causes. I'm so dizzy too. That's the worst! I pray that we can get better.

  5. LadyCarol

    LadyCarol Member

    Thank you so much for your words of encouragement. I can tell you all know exactly what it's like doing battle with this illness day after day. I had a good nights sleep last night for a change and have managed to get through today a lot better than has been the case recently.

    I've been through the usual hoops of councelling & CBT & blood tests etc. which showed my white blood cell is high indicating a virus is lurking within, the doctor is considering taking action if the next lot of blood tests, which are due in a month, continue to show a similar result, at least the thyroid readings are normal since taking Levothyroxine but I haven't noticed any additional energy.

    I find it so hard to be able to look forward to anything in the future as everything seems dependent on how my health is at any moment in time. How do you manage to live your life with this life sucking illness ?
  6. Catseye

    Catseye Member

    It took me years to track down and get rid of my own dying feeling. It's way too much info to list here, but here are some things to search for which should save you much time and trouble:

    liver congestion
    adrenal fatigue
    mitochondria - look for the things they need
    low blood volume
    leaky gut syndrome
    nutritional deficiencies, not just vitamins and minerals but amino acids and metabolites

    You can search here and also google for these. If you deal with these, they will help enormously with the dying feeling. But you are really on your own to figure out what exactly is wrong with you. These are the things that were wrong with me and I think they are pretty common, from what I've read.

    good luck

  7. LadyCarol

    LadyCarol Member

    Thank you, I'll look further into the things you mentioned.

    At the moment I'm drinking pure 100% Purple Grape juice which is packed with antioxidants and I'm feeling a bit better than I have been feeling.

    Has anyone else found Purple Grape juice to be of benefit ?
  8. spacee

    spacee Member

    Virus is LOW white count.

    Bacteria is HIGH white count.

    I don't know if that means you have something that needs an antibiotic or something else is raising your white count but virus is definitely low white count.

  9. csswitness

    csswitness New Member

    My doctor told me that my white blood cell count is low. Do you know what can be done to bring it up? I think it was around 3900.
  10. jasminetee

    jasminetee Member

    When I first came down with EBV I had a high white blood count for many months and they couldn't figure out what it was. This is all so mysterious. My EBV started with a flu but I did develop UTIs with it as many of us do which may explain the bacteria infection.

  11. LadyCarol

    LadyCarol Member

    An elevated white blood count may indicate a heart attack, infection or inflammatory disease, such as rheumatoid arthritis, etc. so there are a number of possibilities as to why it's high.

    If it stays high over a period of time, say several months, then further blood work is usually required to see if the cause can be ascertained but alas it's like finding a needle in a haystack so to speak and that's what is so tiring about this whole thing.
  12. spacee

    spacee Member

    I am sorry but I don't have a clue to how to raise a white count. Mine in the beginning would be very low (1800) and the lymphs would be very low. That was the first few years.

    A few weeks ago it was 3900 and the lymphs were normal and it was on a day I felt horrid. Maybe that was pushing it up, I just don't know.


  13. jasminetee

    jasminetee Member

    I've read that fresh peas which will be in season soon are good for white blood cells. I ate them a lot when I was on the Valcyte because that can cause a drop in white blood cells and my count was always good.

    I shelled them myself and it was ok if they were inky dinky. I just boiled them quickly and salted them and strained them and they were delicious and they helped me feel better.

    There was a Russian supplement too, that I tried for it but i couldn't handle it because I can't handle supps anymore. I forget it's name but I think it was an intense probiotic. The HHV6 Foundation recommended it. Actually, I would contact them too and see what they recommend now for building up white blood cells.

    "How do you manage to live your life with this life sucking illness ?"~LadyCarol

    It is hard but you learn to live within your window and keep counting your blessings. A laptop on a cushioned laptop board helps a lot too, if you don't have one already. I use it on my stomach while lying down. The key is to get a light laptop. :)


    [This Message was Edited on 03/25/2008]
  14. LadyCarol

    LadyCarol Member

    It turned out the high white cell blood count was due to Chronic Lymphocytic Leukemia (CLL) of which there is no cure. Guess this answers the question "How do you manage to live your life with this life sucking illness ?". The CLL started about 2 years after the M.E. according the blood test records.
  15. karynwolfe

    karynwolfe New Member

    This just shows we really do know our own bodies better than anyone else. There is definitely an increased risk of cancer when one has M.E.; I'm sorry you apply to this statistic. I am so sorry you had to find out this news when you've already been struggling to keep going... My heart goes out to you. If there were only some way we could all band together and give each other the support we so desperately needed... I guess this forum is the best way for now. I hope there is some place you can get professional counseling, dear, because no one should have to deal with all of that all on their own!

    I know what ME is like. I do not know what leukimia is like. I pray they both progress at a slow rate, so you can get the most out of your life like we all deserve, and learn the most from each day.

  16. LadyCarol

    LadyCarol Member

    As you say there is an increased risk of cancer for someone with M.E. as their body is already compromised and weakened by the illness.

    The CLL is compounding the symptoms of the M.E, some days it's like having double M.E. and then some. At least with M.E. there was the hope of recovery but with CLL that hope is gone. This afternoon I became severely breathless with chest pain, tomorrow I have an emergency appointment at the hospital so will see what happens next.
  17. LadyCarol

    LadyCarol Member

    The hospital reckons my doctor should refer me to the cardio unit for further heart/lung tests. Today the hospital doctor didn't find anything obviously wrong with the heart, heart rate and lungs but they didn't have a clue about the cause of the breathlessness.
  18. hi all,

    ladycarol you asked if anyone had benefitted from purple grape juice.

    i remember buying the cartons of purple grape juice ,early this year.i had a blister type thing on my face,that was since called (by the hospital),a spider vein papule.when i got hot,or stressed this papule would fill with blood,then burst.ive since had it removed with a device that puts electricity through it.now the papule is gone.

    i would notice that i was dizzy and fibro foggy when this papule used to fill with blood,so i have a open mind, on if my body contains any of these internally.

    anyway,my chlorestrol (spelling),was raised,and i was to have another test a few month afterwards,at the doctors surgery.

    ive lost alot of weight with my part time job,and i bike ride to and from work.

    also i started drinking the purple grape juice. one 250ml glassfull once a day,usually before going to work which was at 2.30pm.

    and after doing it for a few months,my chlorestrol level came down low, and i passed the test.

    im not on the juice now,but thats because of money issues just now.but i can say that my body didnt reject this juice,(some juices make me vomit).

    id recommend the purple grape juice, as i did find my fibro fog eased greatly,which is very important if you want to hang onto a job.

    im drinking ginger root soaked in pre boiled water now.i think its easing stomach issues.and i do plan on going back onto purple grape juice again,when finances allow it.

    take care all,love fran


    im alcohol intolerant, and i had read once that drinking red wine was good for us as it thins the blood.

    then a advert appeared on tv showing the purple grape juice.apparently it does the same thing as the red wine does,to the blood,but you dont get drunk.
    [This Message was Edited on 12/31/2008]
  19. hermitlady

    hermitlady Member

    I'm sorry to hear you're so miserable and have found out about the Leukemia. I really wish everyone here could get better.

    Like others posted, I have been diagnosed w Mitochondrial Disorder. My body chem is so messed up and my cells cannot produce energy for my body. I just got back from the lab and had 9 vials of blood drawn for more tests. I'm thankful for my doctor being so diligent and patient w me. I have just recently been getting more answers besides just FM/CFS, but recovery seems so hopeless.

    I started new supps, amino acids and at home B12 shots about a month ago but I'm actually feeling worse. AHHH! Gets tiring being so sick:(
  20. Lillie17

    Lillie17 New Member

    I am so sorry to hear of the leukemia diagnosis.

    Bless you. I hope there are hours and days when you have moments of relief from
    symptoms, and even moments of small joys. You are a trooper and have graced this
    message board with your presence. Reading this thread of messages has helped me
    see the preciousness of life - even with these illnesses- and how very smart and brave
    we all can be. I hope the doctors can extend your life and increase it's quality.

    To all the other people posting in this thread: you are full of good ideas from your research
    and moreover you have kindness and good hearts.

    Thank you. Thank you all.